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Measurement of outcome is a core part of the rehabilitation process. Outcome measures are used in rehabilitation research and clinical practice to evaluate the consequences of disability and the impact of rehabilitation interventions and services on people's health, well-being and quality of life. However, often the outcomes we are most interested in – particularly those that are person-centred – are the hardest to measure. This RTRU Research Hub is all about research related to the techniques of measurement, psychometric properties, performance of measures and application of outcome assessment for program evaluation. It includes research about what to measure, how to measure and when to measure.

Hub-coordinator: Will Taylor

Outcome measurement in arthritis

Tophus Impact Questionnaire (TIQ-20)

This project was done in collaboration with colleagues from the University of Auckland and AUT; it was the subject of a Masters thesis by Opetaia Aati. The final result of qualitative work, Rasch analysis and validity testing is a self-report questionnaire that provides a measurement of patient-perceived burden from tophi associated with the disease of gout.

The questionnaire is available at no cost from this website.

Aati O, Taylor WJ, Siegert RJ, Horne A, House ME, Tan P, et al. Development of a patient reported outcome measure of tophus burden: the Tophus Impact Questionnaire (TIQ-20). Ann Rheum Dis 2015;74:2144-2150.

Flare as an outcome for gout trials

In collaboration with clinicians around the world interested in gout, we have developed a standardised definition for an attack of gout (flare), which is currently being validated. In addition we are asking patients with gout about many flares they consider to represent different levels of acceptable disease control or response to therapy. This work will help determine how flares frequency can be used appropriately to test the efficacy of gout prevention treatments. Part of this work has been supported by the American College of Rheumatology.

Gaffo AL, Schumacher HR, Saag KG, Taylor WJ, Dinnella J, Outman R, et al. Developing a provisional definition of flare in patients with established gout. Arthritis Rheum 2012;64(5):1508-17.

Gaffo AL, Dalbeth N, Saag KG, Singh JA, Rahn EJ, Mudano AS, Chen YH, Lin CT, Bourke S, Louthrenoo W, Vazquez, Mellado J, Hernandez, Llinas H, Neogi T, Vargas, Santos AB, Castelar dR, Pinheiro G, Amorim RBC, Uhlig T, Hammer HB, Eliseev M, Perez, Ruiz F, Cavagna L, McCarthy GM, Stamp LK, Gerritsen M, Fana V, Sivera F, Taylor W. Brief Report: Validation of a Definition of Flare in Patients With Established Gout. Arthritis Rheumatol. 2018;70(3):462-7.

The multi-dimensional nature of gout flare

Adequate assessment of flare burden probably requires more than just counting the number of flares over a specified time period. Work led by Sarah Stewart at the University of Auckland have investigated what it means to have gout flares in an effort to develop a comprehensive and relevant outcome tool. Part of this work will be a stated preference experiment where people with gout will be asked to answer a series of choice tasks to identify aspects of flare over time that most contribute to their sense of flare burden and those that contribute least to a sense of flare burden.

Stewart S, Guillen AG, Taylor WJ, Gaffo A, Slark J, Gott M, Dalbeth N. The experience of a gout flare: a meta-synthesis of qualitative studies. Sem Arthritis Rheum. 2020;50(4):805-11.

Stewart S, Tallon A, Taylor WJ, Gaffo A, Dalbeth N. How flare prevention outcomes are reported in gout studies: A systematic review and content analysis of randomized controlled trials. Semin Arthritis Rheum. 2020;50(2):303-13.

ICHOM Core set for inflammatory arthritis

The International Consortium for Health Outcomes Measurement (ICHOM) is a collaboration to identify and promote standardised tools for measuring the value of health care. Associate Professor William Taylor has been part of a working group developing a standard set of outcome tools for use in people with inflammatory arthritis. Most of the work for this project is now complete and the standard set is available on the ICHOM website.

Self-reported joint counts in rheumatoid arthritis

This work, led by Rebecca Grainger in the Department of Medicine has shown that patient-reported joint counts using a smartphone app can be as reliable as rheumatologist examination.

Other projects under development

  • ICF core-set for gout
  • PAS-II in ankylosing spondylitis (Patient Assessment Score)
  • Remission criteria for gout

Measurement of strength of self-identify after traumatic brain injury

Research on the lived experience of recovering from a traumatic brain injury has highlighted the importance of considering a person's sense of sense when evaluating the impact of injury on his or her life. Problems with self-identity can arise from a loss of connection with one's body, loss of memory for significant periods of one's life, loss of one's place in the world, loss of relationships with others, and with a loss of the brain ability to create a sense of internal unity (i.e. having a coherent sense of oneself). These problems can be profound and difficult for people with brain injury to express to health professionals. We have completed a series of studies to examine the experience of problems with self-identify after brain injury and to develop an objective measure of this experience. This has included:

This work has culminated in the creation of a new measure of strength of self-identity after traumatic brain injury: The Brain Injury Sense of Self Scale (BISOSS). Dr Emily Thomas, an RTRU PhD graduate, has recently completed her thesis that involved factor analysis, Rasch analysis, and construct validity testing on this new measure - to establish an robust interval scale with three dimensions: 1) egocentric self, 2) sociocentric self, and 3) relational self. We plan to make BISOSS, along with its user manual, free to download and use via this website, shortly.

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